So I was out of the country last week and for the first time in two years of maintenance, missed a Velcade infusion. I'm told I'm allowed to do that twice a year and remain on protocol, so no biggie.
However, I did notice I did not have gastroparesis. Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.
This may be of use the others, hence my posting it. I have a checkup with my local onc tomorrow and will post whatever news is merited!
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Interesting. I've been bothered by it lately moreso than before. I stll think the dex is the primary culprit, perhaps the dex plus velcade combo could be the real deal. In any event, I've found relief going on a one-two day liquid diet (protein smooties) supplemented by psyllium. Anxious to hear what your doc says about it.
ReplyDeleteDefinitely an interesting observation! If it really is the Velcade I wonder if going subcu would lessen the effect (as it lessens the occurrence of peripheral neuropathy). I'm actually waiting for my first maintenance injection of Velcade as I type this...I'm a little anxious to see how the side effects will be.
ReplyDeleteOn Subcu, I asked BB about this and he said "we don't know if it works as well, I'm not going to be the one that finds out it doesn't" so I'll be sticking with the IV version. I've got the port, might as well use it...otherwise it's just an unsightly box under my left clavicle. ;)
ReplyDeleteI'm sure you will handle it well either way, Jody!
Ed, the gastroparesis (digestion stopping completely) is definitely not the dex. When I'm not on Velcade, there is no gastroparesis. But I will credit dex with heartburn among other things!
The drug Reglan is working for me.
Hey Nick, just curious when you asked him about subcu. CR told me they are in the process of getting it approved as part of the protocol (and BB started allowing it for some patients who request it...like me). He didnt express any hesitation to me, wonder what made him change his mind...?
ReplyDeleteThe problem with gasgtroparesis is definitely associated with Velcade in my experience. I really had trouble in the beginning with my induction therapy until I switched to smoothies laced with Miralax.
ReplyDeleteHeartburn and acid stomach upset at night-- and voice hoarseness-- are associated with Dex. Not to mention insomnia and type A-squared behavior on those days...
Revlimid seems to make me prone to leg cramps-- and lately, pretty attention-getting neutropenia.
Hi Jody! I asked him quite some time ago -- when I began therapy, actually, in early 2009. So I'm sure he is comfortable with it now. BB isn't going to change course midstream unless he's 100% certain so I'm sure you are good to go!
ReplyDeleteDan, sounds like we've had the same experiences. I've been very fortunate that I've not had any "aggro" days while on Dex...I've been spared that (rather, my wife has been spared it) for some reason. But I get everything else you mentioned. The leg cramps with Revlimid were the worst but over the counter magnesium has solved that little problem, at the cost of regular gastro-intesinal distress but that's a lot better than the leg cramps! :)
I already drink smoothies the day after Velcade...maybe I'll try the Miramax in them next time! :)
Welcome back home, Nick. Quick question: When you go to LR for check-ups, do you get a Velcade infusion during that testing week?
ReplyDeleteNick, I'm a patient at MIRT and my oncologist Dr. BN let me switch from IV to subc Velcade at the beginning of Sept. So far, so good; I've had zero side effects. In addition I can feel a change in the PN in my hands/fingers. I started Metanx at the beginning of Oct.
ReplyDeletePete -
ReplyDeleteGlad to hear it! I have been very lucky with PN but I take Metanx which seems to work for me, and quite well. I hope it works for you as well!
When I have full resolution of all lesions under MRI perhaps I will switch to subc Velcade. As it is now, I have the port so it's not that big a deal. If I needed an IV started every week, I would feel differently for sure!
We just returned from our LR check up and new doc, (Nair) suggested we switch to the subQ version, but not to take the port out just yet. We will address it when we meet with the locals in a few weeks to see about making the switch.
ReplyDeleteDave has manageable PN intermitted, bloating, fatigue. So we are kinda hoping it handles all of that. Would be nice. :)
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